My Nonprofit Reviews

I found the SPS Research foundation last year when I first got diagnosed in Lebanon, the resources on the website helped me discover Dr. Scott Newsome who is now head of my care team for SPS and it also allowed me to connect with their medical volunteers and other members of the community who also have SPS.

Most recently, it gave me a safe space to tell my story on their website and via their social media channels and I am so grateful I was offered a safe space to share my story!

It’s the first time I have decided to tell my story, why you ask? Because during my non stop journey during these long years I wish I had had read more stories and I had been able to reach out to more people… who knows it might have made a difference.

This is when I started researching, reading, and looking for answers and I realised how little was available but how could it be any different if I was the 1 in a million.

This year has been tough and challenging, finding a treatment that works is still an arm length away. I am doing much better than at my worst a few months ago when I could barely stand, where all kind of noise and visual stimulation would put me in a terrible shape and where I thought things couldn’t get much worse. I will admit it is hard to accept especially at 35 that your body will never be the same. It is hard to see it not cooperate, to have to walk with a cane and to ultimately know this is a progressive disease with no cure. But this has pushed my determination to speak out, want to raise awareness and to be part of the solution.

I am choosing to focus on raising awareness, and hope to do so more and more with the SPS Research Foundation.
Thank you SPS community for allowing me to tell my story and hopefully inspiring others to share theirs.